My Story;
Imagine, you wake up one day and you are paralyzed and cant talk. That is what happened to me. I feel like I went to sleep and woke up the next day and couldn’t move. It was not one day however. I was in a coma for 3 weeks! Before I got sick I was a typical 37 year old with two boys.
My story actually starts two years earlier….For weeks in September 2006 I wasn’t feeling well. I was forgetful, agitated and was losing control of my right side. I thought for sure I had a stroke. I did go to the Dr. and was given antibiotics for a sinus infection…Then in October 2006 I collapsed in the middle of the night. I had to go to the bathroom, fell out of bed…My husband rushed me to the hospital. By the time I got there (about 7 miles)I went from being awake to being in a coma…The hospital did a CAT scan and found a mass the size of an egg! They then sent me to a hospital better equipped to deal with me. They found that the mass was an abscess. They then went in and removed it. My husband was told at the time that I may have permanent damage to my brain. I was in the hospital for 9 days. I was sent home on an IV and continued my antibiotics for 3 months. I was also on seizure meds. After 3 months I resumed my “normal” life. Went off seizure drugs because I hadn’t had any seizures!!!! YAY!!! I felt so lucky! My job was managing 6 group homes for people with DD and MI.
I was fine until July 2007. While on a day trip with my family I had a Grand Mal seizure…I was put on a seizure med….
In August of 2008 I had surgery to remove my final ovary. It was all that was left after a Hysterectomy in 2001. The surgery went well, but after I developed high blood pressure (which I had until my brain surgery in 2006). I was put on a blood pressure med…It was all down hill after that. The next thing I remember is waking up in a nursing home. I have been told for approximately 3 weeks I was vomiting, hallucinating, etc…I finally collapsed after having been to the neurologist, my GP and the ER several times…
So…They FINALLY took blood and found that my sodium level was 100...People aren’t alive with a sodium of 100!!! Normal sodium levels are 135-145. I should note however, that most low sodium cases are found in people who are alcoholics. That was not the case with me, I rarely drank anything for fear of what would happen being that I was on seizure drugs… My husband was told that my heart would stop if they didn’t get my sodium up QUICKLY. However, there was 1 draw back… My Hyponitremia (low sodium level) being brought back up quickly would most definitely cause Central Pontine Mylenosis . What that means is the rapid destruction of the Myelin Sheath. MS, but instead of taking years to get… You get it within 48 hours. I was in a coma for 3 weeks. On the main Neurological floor for 1 one week. While in a coma, my husband was told I would never be the same. I would most likely remain in a frozen state (you are awake, but unable to move or speak). I was also on a feeding tube. It had been in my nose but, it got pulled out by accident while I was being moved from the bed to the chair ( I couldn’t sit or hold myself up but they put me in a chair)!!! After my feeding tube was pulled by accident they put one in my stomach.
I had that feeding tube the whole time I was in the nursing home. Tremors…OMG!! I shook s bad that I couldn’t hold anything!! I still have them, but they are mostly controlled by medication. While in the nursing home I had PT, OT and Speech therapy. My time in the nursing home was the worst time in my life!!! Not only was I unable to move but I had such poor care I was floored. I used to be a CNA so I was sickened by the care I received…The day time care was ok. It was the night time care… un real!! One particular time I can remember I had to go to the bathroom and I put my call light on…twenty minutes later when someone finally came in she told me I should just go in a diaper because she would have to get help (I was a two person transfer) and everyone was too busy…When I refused she left the room and ignored my call light the rest of the night!!! Un real I know, but that’s how it was!!!!!!!! On another night my feeding tube came unhooked, This very large man came in a said “what do you want, I was just going on break” When I showed him that my tube had leaked all over me and the bed he growled!!! He actually growled!!! He unhooked my tube and got a towel, put it under me and left!! He just left!!! It wasn’t until the next morning that I got cleaned up!!! I vowed to get out of there! I worked extremely hard through the pain to force myself to walk!! I would practice in my room at night. Sure I fell a few times but when I did I would crawl to a chair and pull myself up. I am now able to walk with a cane or wheeled walker depending on where we go. The pain I feel daily is almost unbearable. Some days my tremors are so bad I am unable to type. I have to two finger type, I used to be able to type 80 WPM!!!
There are days I wish I had a wheel chair!!!
Therapy…I did out patient therapy after I left the nursing home 3 times a week at the nursing home. I did that until January 2nd when they found out that my insurance was refusing to pay. They then kicked me out!! My insurance…I had to fight with them they were saying that my Central Pontine Myelinosis was “Pre-Existing”… yea, I know, BULL SH**!! After fighting with them for weeks they finally decided it wasn’t. So, I had no therapy for almost 3 months. I went down hill…WAY DOWNHILL!!! I now go 2 times per week. LOVE my therapist. I feel like I am making progress. I will never be what I was, but I will be pretty good. I can dress myself, feed myself, toilet myself and WALK all be it with a walker or cane, but I can!!!! I still have pain daily, but I work through it with laughter!!!
I am writing this because I hear all the time on TV that sodium is BAD for you. NO ONE ever talks about the fact that you do need some sodium!!! Central Pontine Myelinosis is rare but it is out there. I am asking for your help to tell my story. If I can help one, just ONE person so this doesn’t happen to them I will have done what I feel I must. Because this puts our health care programs in the spot light people don’t want to hear about this. Mine was caused by mixing meds that are sodium waisting. Yes, I know you have never heard of this, I hadn’t either!!! My Doctors didn’t tell me that this could happen. It also has other causes; malnutrition, alcoholism, liver trouble, kidney trouble, etc. It is similar to MS in that it destroys the myelin sheath. (the myelin sheath is like the coating on electrical wires. That gets stripped off.) The brain is a wondrous thing, It over time re-routes these electric lines. With that comes a lot of pain!!!
I still struggle with everyday things; brushing my teeth, washing my hair, buttons, zippers, clipping my finger nails. My mom has been there for everything!!! She picks me up every morning, takes me to therapy, doctors etc. I do look at every day as new hope!!! I live in the country. I am unable to drive. I don’t stay home alone my so there is no transportation available. My kids ride to school with my sister-in-law every morning. My life has changed SOOOOO much!!! Please help tell my story. I am begging you!!! People need to know that this CAN happen to them!!
